Exciting week for the Seifert crew.  My permanent teacher came back from maternity leave, Nana came for a visit, I had my preschool Thanksgiving Feast, and Safi performed in her kindergarten Thanksgiving program.

The transition from my long term sub, Teacher Jenica, back to Teacher Stephanie went pretty good.  I was anxious but I kept it together and was glad that the aid Teacher Neaomi was still there.  Nana and mom came to my class on Thursday and hung out with me during our Thanksgiving Feast and it was so cool.  I ate three slices of turkey!  It was really fun to show Nana all of the cool things on our playground and she even dug in the sandbox with me to get pretend water.  We had a really fun time and I think I'll do just fine with Teacher Stephanie once I get used to her.

Safi had an AMAZING performance.  She remembered every line and every routine and I clapped my little guts out for her...until I realized that it was more than one song and wanted to leave.  Mom and dad were so proud to see her up there smiling and waving to us all.  It was a really great moment.  When it was all over and Safi was leaving the cafeteria she yelled, "bye Nixi!"  Made me feel really special.  She's not just my big sister, she's kind of my everything.

Nana took us out to dinner at the Olive Garden and it was super fun.  I asked to sit next to Nana and we just had a blast.  As mom and dad had feared, the stress/excitement of the week's happenings along with Nana's visit did cause an increase in some of my scary symptoms.  I had a few rough nights of hallucinating and it was really scary.  So, now dad lays with me until I fall asleep and mom gives me 2 melatonin/chamomile tablets, benadryl, and gripe water.  I'm struggling to sleep through the night, often waking at about 2am and not being able to fall asleep.  I just stare at scary things and wait for daylight and mom and dad and sister to wake up.  Its really no way to live so November 30th can't come soon enough.  I'm hanging in there...we all are.

Safi struggled on the heels of the excitement of the week, having massive meltdowns on Saturday and Sunday.  Hopefully we can regroup and get it back together because this week is Thanksgiving break!

Overall, it was a really great week.  This week will be a little rough because no matter how much structure mom provides,k it wont be our normal school week routine.  Mom's got lots of activities and crafts planned for us to do and hopefully we'll get to spend some time with Emily, Logan, Zoey, and Josh....perhaps we'll hit up the Shooks, too....Julie?

So, enjoy the video of Safi's school program and have a very gobble-iscious Turkey Day!!

Gobble, Gobble!
Nixi

Safi's program...she's in the back row...look from the right starting with the Indians, then pilgrim boys and she is the second pilgrim girls after the boys.  Safi is wearing bright pink jammies and her white pilgrim hat...because it was pajama dress up day.  (You may have to copy and paste the below address as it doesn't seem like Youtube is embedding.)
<iframe width="420" height="315" src="http://www.youtube.com/embed/796hyaSrVhk" frameborder="0" allowfullscreen></iframe>

Ok, so I'm going to start with the best part of the week....my firehouse field trip with my class and dad.

It was so awesome!  I got to spray the fire hose and I did a great job of asking for my head phones when things like sirens and the fire struck engine got too loud.  Dad was super proud of me and he had a great time seeing me hanging out with my friends.  No pictures this time because dad's phone has no camera and mom wanted him to enjoy the trip instead of lugging around a big digital camera.  So, we had an amazing time and I was really excited to get to share my special day with my dad.

Nixi had school pictures and mom dolled her up proper.  She loved her cool dress and purple bow but was a little confused about the whole picture day agenda.  By the time she was up for her turn she was pretty much over it but they got a cute shot.  When it came time for the class picture there was a little boy from the late day class that kept pushing Nix and it was all she needed to go over the edge.  She got really upset, crying and not wanting her teacher to stand next to her.  Mom was trying to calm her down so she could be in the group shot and a mom of another kid in class was laughing at the situation.  Mom told her that she didn't think it was funny that Nixi was upset and asked her to please stop laughing at her.  She did, and mom was able to get Nix together enough to take the picture.  It was really awkward.  You would think that a mom of another special needs kid would understand that its not funny when a child is struggling.  She seemed to think Nixi's adamant rejection of the teacher was funny, likely because Nixi was very verbal about it and her verbal ability is advanced and sounds like a little adult.  Nonetheless, not funny to Nixi, especially because she was aware that she was being laughed at.  So, her and mom were hot to get out of there as soon as the picture was taken.  The rest of the day was a bit dicey but, man, did my kid sister look cute!

On Thursday mom and dad took us to Olive Garden for dinner.  I was expecting lots of flowers and was a little disappointed when the "Garden" was empty, but we had a blast and felt very fancy at a dinner table with wine glasses!  We did a great job and it was a really fun night!

Mom and dad went to my parent teacher conference and Mrs. Paggi said I'm doing great!  I'm proficient in almost all areas that I should be, I just need a little more refinement in the fine motor skills department.  Other than that, I'm rocking this kindergarten thing!  Mom and dad were extremely proud.

Mom went to Nixi's parent teacher conference and she's doing great, too!  She's pretty much where she should be and she's "a joy to work with."  This week her permanent teacher, Teacher Stephanie, comes back from maternity leave.  So, the teacher that Nixi started school with, Teacher Jenica, will be gone.  Luckily, Nixi's made a really good connection with the aid who will still be there.  Mom and dad are hoping the stress of the change along with the upcoming holidays and routine changes don't mess her up too bad.  What we do know is that stress makes Nixi's symptoms worse.  Right now her psychotic symptoms are mostly residual.  She still hallucinates but at a much lesser frequency and intensity and her paranoia about people comes and goes.  She started getting concerned and a little paranoid about her Teacher Jenica last week so this transition might actually be a great thing.  We've been trying our best to keep her stress down and we think the lessening of her symptoms shows we're doing a good job!

Mom called UC Davis and got Nix scheduled for her evaluation November 30th.  Mom and her will drive up the night before and stay in a hotel.  Nix and I have never stayed in a hotel so should be exciting!  I'll be staying home with dad...again, should be exciting!  

We had some great park days with Logan, Zoey, and Josh and we had a Sunday play date with Arlo, Flyn, and Greer at their house.  All were a blast and we're just really lucky to have such fun friends!  Also, as you can tell from the pictures, we bought a ton of new dress up stuff in the Halloween clearance aisle...SCORE!

This week Nana comes to visit and to attend Nixi's Thanksgiving Feast at her school and my Thanksgiving program at my school.  I can't wait to get up there and sing my little guts out!  We've been practicing every day at school and I'm ready!!  Should be a great time!

A special thanks to Dan for buying mom a computer.  The tablet and keyboard thing wasn't cutting it, so we are so grateful for a new computer to write the blog with.  Saves much time and frustration....THANK YOU!

Here's a link to some information in Bipolar Disorder in children.  Again, we aren't sure what's going on with Nix other than that she has symptoms of psychosis so we're reading up on all of the options.

http://www.thebalancedmind.org/learn/library/about-pediatric-bipolar-disorder?page=all

So, have a great week and be ready next week for some great pics and video of Nixi's Turkey Day feast and my school program!

xoxo.

Safi

For the most part, Halloween was terrific.  I got to go to my preschool's special carnival and that was really fun.  It was a little confusing because there were some kids and teachers with really amazing full costumes that covered their faces and everything.  I wasn't scared, I just thought I was in the presence of Spiderman and Wolverine!  I was talking to them and trying to show them things and I was a bit starstruck.  When the teacher took off Wolverine's mask and I saw that it was my friend, I was amazed.  When Spiderman revealed his true self to be Teacher Tia I was flabbergasted!  Such clever costumes!  Batman was also there and he made me a balloon pirate sword.  I ate a snow cone, played in the Spider House (our playground converted), and I won the cupcake walk.  It was really fun.

The rest of the day was dicey for me but I pulled it together in time to go trick or treating with Logan, Zoey, an Josh and it was absolutely the best!!  The Super Seiferts all wore our capes and we just had the best time ringing doorbells, laughing with friends, and gathering treats!  When we got home we had the best time ever handing out candy to trick or treaters.  I was extremely liberal with the candy and the kids loved me!  Before bed we picked our 10 favorite pieces of candy to keep then left the rest out for the Candy Witch!  The next morning our candy was gone and we got witch bucks to spend at Big Lots, a stuffed black kitty, and a PEZ dispenser!  It was so cool!

I had a really rough time going to bed that night.  All of the excitement of the day caught up to me and I was hallucinating big time.  It was terrifying and Safi got upset, crying to mom "Help Nixi, she's scared."  Bittersweet end to a great day...both of us kids crying and the adults not far behind us.  It is quite common for hallucinations to be worse at night when there's less outside stimulation and distractions.  Mom bought me  a projector thing made for babies.  It has soothing sounds and projects one of three different scenes on a wall or whatever.  Its something for me to focus on because for 3 night this week I would just scream and mom would come in and find me staring at the side of a black file cabinet sweating profusely and terrified.  The projector, most of the lights in the room on, and the door open with the hall light plus a dose of Benadryl has made it a little better.  Its hard on everyone.  Its scary for Safi, mom and dad need a break, and I haven't been getting one so they don't either.  Rough stuff.  So that was Halloween.

Mom got ahold of the people at UC Davis and they said they'll see me mid November of early December.  UCLA wasn't taking patients out of their system and the referral that Children's gave mom said they wouldn't see me because I'm too young.  Mom was horrified.  She asked them what she was supposed to do because I'm obviously not too young to be going through this and they said, "Yeah, but she's too young."  Really?!  At least Davis is willing to try to help me.  So, mom and I will be making a trip up there sometime soon, hopefully.

On a positive note, I've had two pretty good days with minimal hallucinations and delusions.    Hoping it stays like this so I can enjoy school picture day and so Safi can have a more mellow week.  She has a firehouse field trip coming up and she's asked dad to go with her so that should be fun.  Mom and dad are trying to keep the stress down, because that's the number one precursor to a worsening of symptoms an it seems like its working pretty good so far.  This is just all really confusing an new to us all so I can't wait to get up to Davis to get this all figured out.

Anyhow, I'm pooped so I'm going to try to get some sleep.  For some reason mom is having a hard time pasting links to web pages that she wanted to include so do an internet search for "autism and schizophrenia" to see the information she's been reading.

Again, we have no idea what's going on with me other than that I'm experiencing symptoms of a psychotic disorder but its interesting to look at the connections between autism and schizophrenia and its implications.

Peace
Nixi

Pretty good week.  I had some fun days at school.  Everyone is getting really excited for Halloween and Nixi and I are no exception.  Mom's been hard at work on our superhero costumes and we're super excited to go trick or treating with our friends Logan, Zoey, and Josh.  On Saturday we went trick or treating as a warm up in the downtown business area where stores were handing out candy.  It was fantastic!  We are SOOOO ready for Halloween!

Mom took Nixi up to Children's Hospital for her EEG results.  The results came back normal so the neurologist said that mom needs to take Nix to a pediatric psychiatrist for evaluation of a psychotic disorder.  His specific concern was childhood onset paranoid schizophrenia.  That knocks the wind out of you, huh?  He paged the hospital's social worker to come talk to mom about a referral for the psychiatrist and to do a sort of bereavement counseling session.  Nixi was getting anxious and wanted to leave, and mom didn't much feel like talking about her feelings so she took the number and they got the heck out of there.  The neurologist is just that, a neurologist.  He's not a psychiatrist so we'll leave the diagnosing up to a psychiatrist.  However, general medical condition has been likely ruled (brain lesion could cause hallucinations but he didn't see any of the other symptoms that go along with that), so what we do know is that Nixi is experiencing symptoms of a psychotic disorder.  The most common misdiagnosis for childhood schizophrenia is autism.  Up until the mid 1970's autism was diagnosed under the schizophrenia umbrella, getting its own separate category as a pervasive developmental disability in 1973.  There is a great deal of overlap in the disorders.  Mom will be posting some information about schizophrenia and autism in the following weeks at the end of our posts so stay tuned for more info.  Mom and dad are also asking that all of our family think back through the family tree for any and all mental health issues, as this information will be crucial in getting an accurate and appropriate diagnosis for Nix.  Psychotic disorders in children are EXTREMELY rare, so family history can help narrow down which disorder it is as they all have slightly different origins and they all need to be treated in a very specific manner.  So an accurate diagnosis is absolutely imperative.  Its not the most pleasant stuff to dredge up but if it help my sister, I think we all need to do whatever wee can.  So, Seifert and Cummings clan...email, call, or send a letter with any information you have about any mental health issues...depression, anyone who took medications, anything.  We really need to rally behind Nix and mom and dad so we can get a handle on what this is and start dealing with it accordingly.  Time is of the essence.  While Autism is not a progressive disorder, the psychotic disorders when diagnosed in children are progressive.  Prognosis and severity are based on age of onset...the younger the onset of symptoms the worse the prognosis/severity.  Nixi is 3 and a half.  Her disorder will continue to worsen...we're just seeing the tip of the iceberg.  So, mom and dad really need to get a handle on things so they can prepare for the worst, hope for the best, and help my little sister.  More info to come in the following weeks.

Have a spooktacular Halloween!
xoxo
Safi

We had a pretty good week.  Safi got a clean bill of health from the doctor and her bottom is feeling much better.  She had a dental hygiene exam at school and lots of other routine changes but she did great.  She's really got this school thing down!

I got to go on a field trip to the pumpkin patch and it was really cool.  I picked a huge green pumpkin and I had a blast playing in the huge boxes of corn.  I'm still struggling to find places where I feel safe and comfortable and I've been having some difficulties at school with hearing noises that nobody else hears.  My teachers are really good about helping me feel safe but its hard when I'm having a hard time knowing what's real and what's not.  I'm getting more and more anxious at home, too.  Mom is teaching me ways to keep my mind off of the things that scare me like noises, voices, and the stuff I see.  She sings to me and taught me how to hum.  It works pretty good, but it doesn't make them go away.  Its hard to be me.  I just want to feel ok and that's getting harder and harder and I know its hard on every around me, too.

Mom got my neurologist appointment moved up to this Friday, the 26th.  Safi doesn't have school so she'll get to hang out with dad while mom and I head up to Children's Hospital.  Hopefully they'll be able to tell us something so we can start figuring out what to do to make me feel better.

We went to our friend Jewel's birthday party this weekend and it was awesome.  She had a princes bounce house and we got cupcakes and nachos.  It was the best.  Safi had a blast playing with Kameron, her old classmate and Jewel's brother, and I had a blast playing with a balloon and a nine iron gold club.  Good times!  During the week we got to play our friends Logan, Zoey, and Josh after school at the park and that was the best.  We have a lot of good friends and that makes us feel really happy and really special.

Mom's working on our Halloween costumes and we're geting really excited to go trick or treating.  Its been a long day so I'm going to bed.  Make sure to check back next week to ses what the neurologist said.

Peace

Nixi

I LOST MY TOOTH!!!!  I really didn't want to go to the dentist or miss school so Sunday night I wiggled and jiggled that sucker in bed and Monday morning I was toothless.  Where there's a will, there's a way.  I got to go to school and I got to put my tooth under the pillow for the tooth fairy.  She brought me a princess snap bracelet and a new toothbrush.  So cool.

The rest of the week was full of bottom drama, as I got a huge cluster of boils called a carbuncle on my butt.  It hurt so bad.  Mom made me a pillow to take to school because sitting was horrible.  The doctor gave me antibiotics and said that if it didn't drain he'd have to lance it on Friday.  I have no idea what that means but mom and dad soaked my bottom like there was no tomorrow and it drained on its own.  I still have to go back to the doctor later this week to make sure its healing well, but it feel a whole lot better.  It made school a little dicey but Mrs. Paggi said all things considered I had an absolutely wonderful week!

Friday I got to go on my first kindergarten field trip and it was AWESOME!  We went to the local high school's farm.  I was a little anxious about going so I asked Heather, my BIA, to go.  Friday morning was rocky.  Nixi was hallucinating and was really freaked out so that was upsetting me but I ended up having the best time ever!!!  My friends and I kept hugging, we played rock paper scissors waiting for the bus, and and I got to plant my own flower seed!  It was great from start to finish and we got back to school in time for lunch on the cafeteria and library time.  Just the dreamiest day ever.

Nix had her EEG on Wednesday.  Mom and dad had to keep her up late and wake her up early so she was pretty loopy.  Mom was afraid she's fall asleep in the car on the way there so she tried to keep her talking.  Once they got there mom forgot that the lab was on the second floor....and they were almost over before they started.  Nix saw the elevators and panicked.  Mom found the stairs but Nix thought mom was trying to trick her onto an elevator.  With lots of coaxing mom got her into the stairwell but Nix freaked out because it was tall and concrete.  She dropped to the ground and fought mom when mom tried to pickher up.  When Nix doesn't want to be picked up because she thinks she's gonna die...you aitn picking Nixi up.  Luckily, a lady came down the stair and distracted her for a second giving mom an opening to grab her, stick her un's about itder her arm like a surfboard and bolt up two flights of stairs.  By the time they go tto the top an into the second floor hallway Nix was saying tshe loved the stairs.  What a weirdo!  The tech who did Nixi's test has a brother with autism so he had great "feel" and he did a great job of understanding where Nix was coming from.  While it started dicey, mom turned her phone video camera on facin gNix so she could watch what the tech, Eric, was doing and that was made everything a lot less scary.  They should have mirrors in that place.  Anyways, she go ther head wrapped like a mummy and completed all of the test.  Eric said she moved a lot nmore than your average kid but he thought the results were interpretable so good deal.  It was draining for all, but its done.

So, crazy, scary, fun, exciting, week here.  This week mom is going to start getting our superhero costumes together and that's about it.  Nice to have a normal week.  That's our story and we're sticking to it!

xoxo
Safi

Nixi's EEG

The dalmation molly (white with black spots), Candice.

Tacky..very pregnant!

We had an ok week.  I'm still in a funk and poor Safi is doing everything she can to try to not let me drag her down.

She had a great week at school.  Mrs. Paggi said she's been doing amazing and even showed some major flexibility with some unscheduled routine changes.  She only struggled once the whole week and it was minor with Safi moving on in a matter of minutes!  On the 12th Safi gets to go n a field trip to the high school's farm and she's really excited.  She asked Heather to go with her and I'm sure theyll have a great time!

I had a pretty good week at school.  We dot to read Halloween stories and make Halloween crafts and I'm super pumped for the pumkpin patch field trip on the 18th.  I'm getting used to my new friends at school but , much like the park lately, I'm having a hard time reading their intentions and I'm also preoccupioed with thoughts that the other kids are going to take my things or harm me.  Mom's been noticing that its been geting way worse so she mentioned it casually to my teacher who confirmed that she nad the aid had just been talking about that and, indeed, it is getting worse.  I just can't seem to shake the paranoia that other kids are out to get me.  Its sucks and its hard to have fun when you're on high alert.

Safi has to go to the dentist on Monday.  Remember three weeks ago when Safi had the HUGE meltdown leaving school?  Well, a wekk or so after she told mom and dad that her tooth was loose.  Mom immediately thought back to the meltdown because she had smashed her face several times into the car window.  However, she and dad thought,      hoped, that maybe she was just losing her first tooth.  Alas, 3 weeks later its loose as ever, her gums are purple, and it shows no signs of coming out naturally.  So, it would appear that she knocked it loose during that meltdown.  She's super bummed because she's goingto be missing school and she has no idea this visit may entail x-rays and actual pulling of the tooth.  Poor sister.  Heather will go with us to help and hopefully things go smoothly.

I have my EEG on Wednesday.  I'm not quite sure what that is and I'm not so sure I'm gonna like it.  I guess they're going to stick all kinds of wires on my head or something.  Sounds kinda fun, for like a minute.  Hopefully I can make through the whole test.  Quite a week ahead.

I am happy to report, though, that we did decorate the heck out of the house and it looks amazing!  We also had two playdates over the weekend.  One with Kameron and Jewel, our friends from Safi's preschool class and one with the Olsen kids.  It was a busy weekend and we had a great time.  Our fish, Rocky, died and that was sad...but we got some new fish and that was awesome!  Safi got two fish she named Candice and Isabella after Phineas & Ferb cartoon characters.  I named my two Hacky and Tacky.  We woke up this morning to baby fish!!!  Candice had babies and it looks like Tacky is due any day now.  We knew Tacky might be pregnant but Candice was a total surprise.  They're super little and super cute and Safi named them Stacey, Jeremy, Perry, Dr. Doof, Balgeet, and Beuford...more characters from the show.  So, with the bad there is good and we move forward.  Wish us luck and check back in next week to see how it all went down!

Peace
Nixi